Today I had an appointment with a new Doctor. And he has a plan.
I don’t know if you remember when I had my last operation, and Dr Ravi found that my windpipe had collapsed again, well, he made a plan to send me over to another Doctor who he said was a Professor and the top of his field. He was going to investigate further into what was causing my windpipe to keep collapsing when Dr Ravi, who is the leader in his field, keeps stretching it by balloon dilatation.
Mummy and Daddy feel very lucky that I have the best Doctors looking after me, giving me the best possible chance.
So, my appointment came through, and off we toddled. Unfortunately Daddy couldn’t make it and so Mummy dropped Austin off at Nannies and she took me to the appointment all by herself.
She brave-faced it but I could tell she was nervous. We have built such a great relationship with the consultants in ENT and Respiratory and cardiology and even the kidney clinic and Mummy didn’t know how she felt adding someone else into our team. Someone who didn’t know Mummy & Daddy, who didn’t know me. And she was taking that on, letting that person in, without Daddy by her side.
We sat in the clinic waiting room and it was the same waiting room where we go when I see Ravi. I was none the wiser, until we went down the corridor and a lady wanted to do my height and weight. That wasn’t normal. I sensed something was going on. Then, when I was called a second time and taken into a different room and the guy in the chair wasn’t Ravi, I panicked a little, but soon engaged with the toys and let the grown ups talk about me.
Professor Campbell was VERY matter of fact, very medical, very straight and not at all like Ravi and Rob and Kelechi, the Drs we are so very used to, but maybe that is because of the great relationship we have with them. Mummy found herself zoning in and out of the conversation whilst he was talking to her. She knew he was good at his job, instantly, she bought into his very obvious wealth of knowledge and his confidence in dealing with me and my body like it was just an every day occurrence.
He drew Mummy a diagram, and it wasn’t a quick one, Mummy couldn’t believe that he even drew ears on my diagram when actually it was about my tummy, the detail was intense. She was thinking instead of listening.
Meanwhile, I was lay on the office chair spinning round in circles, eye-balling the both of them and the nurse in the corner, just in case any of them fancies busting a move and trying anything ‘medical’….
He explained to Mummy that he thinks the reason that I have lots of secretions and Mummy and Daddy have to do lots of suction is because my body is producing excess secretions in response to silent reflux. He also recognised that I vomit with excess secretions and that we can’t rule our this being a reflux thing either.
He said that we need to work out what is going on and then treat it, and it may be that once we treat whatever it is that is driving my airway to collapse again and again, we will be in a better place to face decannulation and trachy-free life. Eventually. Hopefully.
He gave Mum 4 options, one of which was a putting an NG feeding tube in. I could pull those bad boys out at minus three months old so I am sure as hell going to remove it now. So that definitely wasn’t an option.
Mum went with the 4th option which was taking me to theatre. She wasn’t willing to medicate something which we have no evidence to diagnose in the first place, she wasn’t willing to go with a feeding tube either. She said to the Doctor that she isn’t willing to take me down an avenue, one way or the other, without facts and evidence and so unless he takes me to theatre and carries out a biopsy, then there was to be no plan as I have already had lots of medications and lots of treatment and she doesn’t want to put me through anything else unless it is necessary.
And so that there is the plan. I will go to theatre AGAIN, they will place (this is the exciting bit) a wireless probe inside me and watch my insides work on a mobile phone. They will also take a biopsy and run a number of tests, and from this they will have a wider plan going forward with the hope of trach-free life.
We live in hope!
This is me legging it out of the building after my appointment!